My numbers have been low and getting lower I think that test last year was below 2%.
This year they have done another test and the JAK2 mutation result has come back as NEGATIVE, spoke to the specialist nurse, just incase there was an error, but no. They could not find any detectable JAK2 mutation!
I am now on 135mg interferon every 10 days.
Yipeeeeeeeee
Oh yes the symptoms are still there...
Great news, Good for you. Does this mean you will be able to take a holiday from INF or do you need to stay on the drug for a longer time? Hoping it stays negative forever. Best to you.
I suspect not, its the interferon that is keeping my blood in line...
I have read several articles (don't remember where) but in some of those articles they said if your AB goes below 10% and stays there for 2-3 years then perhaps that patient can try going off the INF. Just wondering if you had heard anything about that. I am almost 75 do you think that is too old to switch to INF from HU. All my blood counts are normal on HU. My MPN specialist says why mess with success, he recommended I stay on HU but will switch me if I want. I have no symptoms that I know of from the HU.
Best to you.
I will turn 70 this year and am also on HU and have the very same question. I do not have an MPN specialist available in my area and my oncologist hematologist has the same attitude… Why change if the HU is working? I realize that the HU will not prevent the disease from progressing and quality plus quantity of life is very important to me. I see my doctor again on Monday and plan to try again with my questions.
Let us know what he recommends, I am sure a lot of patients have this same concern.
Best to you
Great news! Perhaps the symptoms will also alleviate somewhat over time....
Fantastic result ! 👍
Did you ask your haem what could explain the erythrocytosis in the absence of JAK2 ?
A most pleasant happy accomplishment. I know you've been under 2 for a while, now it's vanquished. But what really matters is how we feel, as we know too well.
Is your HCT holding in range on 135? Have you ever done the NGS, the deep genetic look for any other mutations? It's one possible explanation for the continued MPN troubles.
Has your Dr discussed the option of IFN/Rux combo? Rux for some reduces symptoms better than other options, sometimes quickly. But it's not for everyone.
Did you ever get the Shingrix vax? Your fight with shingles was no fun.
My HCT has a target of 0.45, it has stayed very close to the target, the135 was weekly but they changed it to every 10 days, so effectively equivalent to a 90 mg over 7 days.. I will ask about other DNA changes when I have the next consultation.
No Shingrix vax as I had shingles last year and there has to be a break between getting shingles and Shingrix vax, my head is still sensitive to touch.
NGS???
Sorry for not connecting the NGS meaning. it's "NextGen Sequencing". It looks for "non-driver" mutations. TET2, DNMT3A are two common examples. I got 54 genes checked, it goes to over 200 now in some tests. Some of them can be resistant to IFN and remain a factor in the MPN condition maybe even absent Jak2. It's mostly for info at this point since there is not much beyond our current therapies to address them. But it's good for future reference.
I was usually a bit or a lot out of it on IFN, malaise being the top issue. But I was forced off. As Hunter says the IFN could be a reason for your ongoing issues. Did you feel any better while at 90/week? (other than the blood counts)
Good news! It does show the complexity of MPNs that you still have symptoms. I wonder if the symptos are actually adverse effects.
congratulations 👍
Fantastic news! Are you on Ropeg or Pegasus? I’m curious whether you know for sure if the symptoms that you are still experiencing are from the drug or disease-
I'm on Pega,,
Great news.
Ask your doctor advice to reduce your Pegasys doses, step by step.
My Peg 135mcg doses from every week 2 years ago, reduced to every 8 weeks now.
Still experience the simptom, but at least all blood count stay stable.
This last May, I will do general check
Cheers
Hi Shiftzz , The reduction of the JAK-2 is remarkable!! What MPN symptoms are you still having?
Shiftzz —- That is so interesting that you still have symptoms despite normal blood counts and allele burden! Almost all my symptoms (brain fog, fatigue, visual scintillations, headaches) resolved once my counts got to normal. The only symptom that has persisted is very slight burning at the top of two toes. What a strange disease we have!
It was suggested to me that even though the bloods are within range and the JAK2 is down, I still have PV.
This is what the AI(Gemini) has to say about it:
« Here's why a JAK2 negative polycythemia vera patient might still require Pegasys injections:
Clonal Origin: Even though the JAK2 mutation is no longer detectable, the disease itself likely originated from a mutated clone of cells that continues to drive red blood cell production. This mutated clone, though lacking the previously detectable JAK2 mutation, might have other alterations causing the overproduction.
Alternative Mutations: While the JAK2 mutation is the most common in PV, other, less frequent mutations can also cause the disease. These mutations might not be detected by the current testing methods, leaving the underlying cause unidentified.
Epigenetic Changes: Mutations don't solely determine the disease state. Epigenetic changes, which influence gene expression without altering the DNA sequence itself, can also play a role in PV. Even with the JAK2 mutation disappearing, these epigenetic modifications might persist, sustaining the abnormal blood cell production.
Bone Marrow Abnormalities: Bone marrow changes associated with PV, such as increased cellularity and fibrosis, can persist even after the JAK2 mutation disappears. This altered bone marrow environment might still contribute to excessive red blood cell production.
Unstable Hematocrit: Despite the negative JAK2 test, the unstable hematocrit indicates an ongoing problem with blood cell regulation. This suggests that other factors are still contributing to the condition, necessitating continued treatment.
Therefore, while the negative JAK2 test is unexpected, it doesn't necessarily mean a cure or the absence of a driving force behind the disease. Continued Pegasys injections are likely necessary to control the hematocrit and manage the remaining underlying cause, even if the exact mechanism is not fully understood.
Here's what the patient might want to discuss with their doctor:
Repeat testing: Consider repeating the JAK2 test using more sensitive methods or exploring tests for other less common mutations associated with PV.
Alternative testing: Investigate other potential causes of the persistent erythrocytosis, such as elevated erythropoietin levels or bone marrow abnormalities.
Treatment options: Discuss the possibility of adjusting the Pegasys dosage or exploring other treatment options based on the latest test results and the patient's specific situation.
It's important for the patient to continue receiving medical care and monitoring under the guidance of their hematologist to ensure optimal management of their condition.
I’ve heard many others say that symptom burden can be unrelated to blood counts. I’ve also heard that blood clots are not necessarily related to platelet/Hct control. For me, though, the symptoms went away with normalized counts. I find this disease so frustratingly “irregular”. So many variances between patients and their response to the disease and the medication! Why do some respond at low doses and others need maximum doses? Why is there such a variance in symptom burden? Frustrating!
I’m encouraged by your allele reduction. I was 27% when I started Peg, and it took 180 mcg /week for me to respond. I’m looking forward to having my allele burden retested this summer at the one year mark.
.my results
« The Qiagen RotorGene platform, when used with the appropriate kits, can detect the JAK2 V617F mutation with a sensitivity that reaches as low as 0.01%.This level of sensitivity is crucial for monitoring minimal residual disease ».
It shows that your Jak2 level is therefore inferior to 0.01%
fantastic news👏
No mutant burden
Allele burden shock
Jak2 Allele Burden reveal
Re: ALLELE BURDEN FREQUENCIES IN MPNS IN AUSTRALIA?
Is JAK2 Allele Burden Monitoring routinely done?
